How are people with liver mets doing?
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Momall, I was on a trial with Oliparib (parp inhibitor) that did not work for me. It has just been approved for breast cancer in BRCA positive women. I am back on Carbo and it is already lowering my TM's. The problem I had before with Carbo was keeping my platelets up so I could get the treatment. I have already had 3 weekly treatments and was supposed to have another one today, but the south got snow and it was too dangerous to drive. I rescheduled for tomorrow pending road conditions.
I pray the embolization goes well and solves the problem. I will be thinking about you both.
Robin
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Kaylyne. That’s great!!!!
This blood clot thing isn’t easy at all. I’m still in a lot of pain. I have to give myself twice daily injections. Ugh! Went to RO today who told me Radiation did nothing. My back is burned and my foot is still numb. During Radiation I had to stop treatment for 2 weeks during which my mets progressed significantly. All for nothing. The RO talked about doing more Radiation in the future. A big NO to that! My mapping for the Y90 is this Friday. I’m hoping it’s relatively easy!!! I need a break. Can you tell I’m feeling very frustrated today?
Sorry
Bab
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Babs, it is no wonder that you feel frustrated. You have been through the ringer lately. You had to take a 2 week delay in treatment so you could have radiation that was ineffective, suffered progression during that break in treatment, returned from Paris to a NY airport in chaos, developed a painful blood clot that will take time to resolve, have to self-inject an anti-coagulant twice a day, are an ocean away from your beautiful daughter and precious grandson, and now face a procedure on your liver, and are experiencing pain. Who wouldn't feel frustrated after all that? I am amazed that you are still functioning so well. I think that I would be curled up in a corners screaming, whining, complaining, and crying. I will be thinking about you when you have the mapping done on Friday. I hope things go smoothly for you from now on.
I am sending you big (((hugs))).
Hugs and prayers from, Lynne
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Good lord Babs. Doubling down on prayers that you get a break. Soon.
>Z<
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Babs, a small word of encouragement. When I talked to the interventional radiologist about Y90, I asked about radiation-resistant cancer. He smiled and raised his eyebrows, and told me something to the effect that if external radiation was a little gun to the cancer, Y90 was a bomb! I hope it is da bomb for you.
Candy, I have a second opinion onc, but I only go see her when I am making a big decision and want more input. I think it is reasonable to be followed by your local onc and check in with #2 any time you feel uncertain, not just if there is obvious progression. Get all your reports and keep an eye on things (if you feel up to it) so you'll know when an appointment is in order.
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Zarovka, travel is the best education.
Good for you, Grannax, taking a break to get over the flu. Our overall health is so important; we do not want to start a downward spiraI. I told my onc I wanted to adjust my Xeloda schedule so I will be at my best for an important performance coming up, and she was totally on board. Quality of life.
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My hair is thinning and the thinning is accelerating. The shower drain had a serious wad of hair today. I am off all meds except lupron to suppress my ovaries. I've been on hormone suppression for 2 years. Why would this start now? Researching halos and fancy shampoo. I've got bigger problems but this is really bothering me. Grrr.
Shetland - nice job adjusting Xeloda so you can dance. How's your exercise plan going?
>Z<
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It's perfectly understandable that hair thinning bothers us. Mine did that for a while and I made my hairdresser promise to tell me if it got too thin in back. Maybe your hair thinning is from a sharp change in estrogen levels? Maybe a shift rather than an absolute level could cause it? If so, I would think it would calm down after an adjustment period. I think this because I read that hot flashes work that way during normal menopause. They happen as estrogen levels are changing, then diminish. If you decide you want to camouflage it there are all sorts of hair pieces.and also scalp makeup and some fibers you sprinkle on. Have you visited good wig shop?
I'm back on the exercise wagon. I feared my holiday lapse of several weeks would affect my tumor markers, but they are still low normal! But I did feel worse emotionally and I think I lost some conditioning.
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Zarovka-I have been using Monat since Thanksgiving and my hair has grown like crazy and the thinning spots have filled in. It's sold via consultants so my advice is to look for one in your area. My boyfriend's hair is also thinning and it's working on him as well.
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Shetland - thanks. There has been no change in my estrogen levels. It's been non-detect since diagnosis 2 years ago. I've been hoping for weeks it was transient. To see that pile of hair in the shower drain dashed those hopes.
Kaylynne - I am glad to hear you had good experience with the Monat product. I distrust their social selling strategy. I don't know why a legit product would sell that way. But I've used their hair thickening product and it's very good, so they were on my list.
>Z<
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Hi Shetland / Z - Which Monat product do you use?
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I have used the Monat Magnify products, although I did not use the mousse. I had more faith in their ability to make my hair thicker (appear like i have more hair) than actually grow more hair. This was a while ago when I was worried but had no hair loss. It made my hair crazy thick. They have a product called Let It Grow system that is supposed to stimulate growth. I may try that at some point.
In the meantime, I researched the Ultrax line of products for hair growth and they seem to get results. I am trying that now.
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As I previously posted under a Doxil thread, so far five months of Doxil has knocked my tumor markers down 80% after failing on Xeloda, and Ibrance and Faslodex. Regression has been confirmed by a PET scan. The most significant improvement has been with my liver. So I am grateful, but I am losing my hair too!! It has been hard adjusting to short and dark after living with long and blonde for 35 years. Thank you Z and others regarding suggestions for keeping hair growing or looking thicker. Normally I am pretty upbeat, but today for some reason all of our struggles both large and small are making me sad.
Hugs to all,
Kimberly
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Kimberly,
Hair loss was a emotional blow for me and when it became apparent that I would lose it completely, i visted a upscale hair salon that only provides custom hair for women treated for BC. I had them shave the remaining hair and could barely look at myself in the mirror.
I did love my hair and actually mourned it's loss. I chose a European hand tied wig and had them put highlights similar to the style I had worn. I look fine in public, for excersize I use soft caps with a tie. I would still like to have my hair back but it won't be for awhile. My eyelashes are still intact but who knows, I only hope I won't lose them.
I am joyful about your tumor markers, that is really great news, celebrate,when it's a good day
I just got my ct scan and a very detailed report, along with the images and software to view them, anyway, decreases in lung and liver lesions, no new lesions, enzymes normal, liver size normal, ,good news, so I'll continue with chemo and perhaps in the future, I can return to a harmonal. I had a good run with vibrance
Mom all,
Dani is in my meditatins, hoping for better days for all of you.
Kathy
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Kimberly - Kinda sad today as well, easily thrown. Hang in there. Hair loss is a small thing but it gets me feeling like a cancer patient, which I can usually avoid.
>Z<
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Kathy and Z, Thank you so much! I just realized that three years ago today is the day that I was diagnosed. Probably why the blues hit. Plus am covered in a "unusual" Doxil rash. Honestly I hate when they say that stuff---"wow, this is unusual." I know the hair thing is just the hair thing....and a walk outside definitely helped remind me that I CAN walk outside. So I am taking in the good
Kathy, fabulous scan results. Doing a happy dance for you.
MomATT, have followed along and am sending light and hope that Dani's health improves and stabilizes. You are one amazing mother.
Hugs,
Kimberly
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Hello everyone,
I do more lurking/brief pop-in than posting but want to chime in on hair loss. I wasn't as upset about the hair loss as I imagined. Can't say why though. Maybe just getting older or having an amazing partner who never wanted me to reconstruct (I never did either) and likes me bald. When my hair really started to shed and thin I had my hairdresser shave it. I have a hand tied wig that is very light and I like it. The only way I don't feel like a cancer patient is when I wear a wig. Forget turbans or scarves they make me feel the worst. I'd love to go out bald but I'm not there yet. For sure I would need to have a closer shave because not all my hair came out and what is left grows a little and I tend to look like the Peanuts character, Linus.
On the upside, I needed to pay more attention to my brows and now that I have very little left and have to draw them in they actually look better. I miss my eyelashes a lot though.
Thank you all for being you. Even though you may not know it, you give hope and support to women you don't interact with.
Wishing all much love and light and good days.
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intothewoods - thanks for your post. we do get used to a different sort of normal. hang on to that partner.
>Z<
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I went through complete hair loss during chemo for round one in 2014. I tried a wig and hated it. I used pretty scarves and artsy earrings. I had chemo for 4 months and got through knowing it was "temporary".
I have not had thinning hair with the hormonals for MBC. Second time around, i completely dread the thought of hair loss. I don't want it public that I am a cancer patient. I don't think I'll handle it well at all.
I am thinking of those of you facing this now. it stinks and it hurts. period.
So happy to read of the good results for folks, and holding everyone in the light. MJH
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Kimberly and Kathy, sharing happiness at your good scan reports!
I totally get wanting to go about not looking and feeling like a cancer patient, or older than our years. But I know it is likely that one day I will again face losing hair, and will reach for that wig and scarf box on the shelf. Z, you are an excellent problem-solver, and I'm sure you will find the best way to deal with it for you. I'm sorry you have this going on now. "It's always something."
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Hair matters definitely make it hard to forget being Stage 4 for any sort of long period throughout the day. The reality that one looks sick really brings it home.
I am feeling very disappointed as I will need to postpone my every 3 week chemo on Friday because I am sick with a nasty bug. I had to postpone my last treatment because I was sick with another bug. And the one before that, I didn’t postpone but should have because I was coming down with shingles at that time. I have been sick with one virus/bacteria or another for 2 months. The holiday season was very crazy with all the family and travel and work was pretty crazy too. I am now committed to taking better care of myself and praying that this current bug is the last one for a long while! I am also worried about delaying chemo because my liver mets can become ferocious very quickly.0 -
Yes, JFL, please do take extra good care of yourself, and do everything you can for your general health. Hopefully that will put an end to this run of illnesses and at the same time discourage the bad cells. Is your vitamin D level ok?
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JFL- wow, what a lousy session with viral infections. No wonder you feel anxious about having to postpone chemo. You must feel a bit run down also.You've had your share, now it's time those flipping viruses to clear out! Hoping that happens STAT, and you get back on track with everything.
Hugs-MJH
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Shetland, thank you for the encouraging words. JFL -- two months of chronic sickness on top of treatment is really a challenge. I am hoping that you recover quickly and that your treatment can resume soon. Those ugly liver mets can really cause anxiety and stress. Sending love and light and a little bit of sunshine from Florida.
Kimberly
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Thank you for your responses, Shetland, MJH and Kachincolor. Shetland, I haven't had my vitamin D levels checked in years but do take daily 2000mg vitamin D as well as a calcium supplement with vitamin D (per MO). Without the supplements mine is low. Kachincolor, where are you in Florida?
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JFL - I have been battling one bug after another for 2 months as have most of my family. I coughed so hard for so long i strained my upper back and possibly my sternum. The sternum pain could mets or a strained muscle, or a combination. This of course is wreaking havoc with my mind.
My main point is that its a bad year virus-wise. Hang in there.
>Z<
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Z, that is certainly true about it being a bad cold/flu season. Everyone at my work has been sick. And my son has been sick several times. The sternum pain can be excruciating. Especially since it is hard not to move one's sternum. Laughing, coughing, breathing. I hope it is a strained muscle only.
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Thanks JFL.
>Z<
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JFL, it might be a good idea to just check and see if your vitamin D dosage is still doing the job, as I have read that the older we get, the more likely our bodies may not make enough D. My kid got sick so much one year that I asked to check D levels, and we discovered they were very low, which affects the immune system. That said, we can't totally avoid all these stupid viruses any more than we can avoid...you know.
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Shetland, I can ask my MO's office to throw in the Vitamin D test at my next appointment. No harm in that and I agree, it is good to test it once in a while.
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